APPLICATION PACKET

CONTENTS |

Welcome | 1

Vision Statement | 1

Mission Statement | 1

Thanks | 1

Collaborative Overview | 2

Interstage Change Package | 3Leadership | 3

Participation | 3

Participation Fee | 5

Key Driver Diagrams | 5-12

Intent to Apply | 13

Site Application | 14-15

Team Information | 16

Senior Leader/Administrator Agreement | 17

After Application is Approved | 18

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WELCOME|

Thank you for your interest in the National Pediatric Cardiology Quality Improvement Collaborative.

This application packet is to guide you in understanding the Collaborative, and the Collaborative activities and expectations.

After reviewing the packet, please submit the following: Intent to Apply form Site Application including:

o Core Improvement Team Information formo Senior Leader/Administrator Agreement

VISION STATEMENT|

Our vision is to dramatically improve the outcomes of care for children with cardiovascular disease.

MISSION STATEMENT|

Our mission is to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families.

THANKS |

We are grateful for the support for NPC-QIC from:The Children’s Heart Association of CincinnatiThe Pediatric Center for Education and Research in Therapeutics (CERTs) at Cincinnati Children’s Hospital Medical CenterThe Heart Institute at Cincinnati Children’s Hospital Medical CenterNPC-QIC Participating Teams

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COLLABORATIVE OVERVIEW |

The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is a network of over 50 pediatric cardiology care centers across the United States and the District of Columbia. With our parent partner organization, Sisters by Hear, we work together with families, clinicians, researchers, and patients to dramatically improve the outcomes for children with cardiovascular disease. Started as a pilot of 6 academic centers in 2009, NPC-QIC has focused on infants with Hypoplastic Left Heart Syndrome (HLHS), a rare, severe and complex congenital condition in which babies are born without a functioning left ventricle.

NPC-QIC initially focused project efforts on infants with HLHS (and similar univentricular hearts requiring a Norwood Stage 1 operation and expected further single ventricle palliation) during the “interstage” period between their first and second heart surgeries. The aim of this project was to: 1) develop and support a robust national registry to gather clinical process and outcome data on the care of infants with HLHS in the “interstage” period between the first and the second palliative surgical procedures, 2) engage pediatric cardiology programs in using the registry, and 3) use data from the registry to support and monitor the implementation of QI strategies to standardize and improve care for these infants. Data from the NPC-QIC registry enabled the Collaborative to document a significant reduction in interstage mortality for infants cared for by participating teams, providing justification for the expansion of project efforts. Thus, this proposed Phase II of the NPC-QIC project focuses on infants with HLHS (and similar defects requiring a Norwood Stage I operation) from diagnosis through the child’s first year of life. The aim of this Phase II project intends to: 1) develop and support a robust national registry to gather clinical care process, outcome and developmental data on infants with HLHS between diagnosis and the first year of life, 2) engage pediatric cardiology and cardiac surgery programs in using the registry, and 3) use data from the registry for research and to support and monitor the implementation of QI strategies to standardize and improve care for these infants.

NPC-QIC currently includes over 50 Care Centers, the majority of centers that perform surgery on infants with HLHS, and a registry of over 1,600 survivors of the initial Stage I palliation surgery. They have enrolled over 94% of eligible patients at these centers, and are actively conducting improvement projects and clinical research. NPC-QIC is working to transform the collaborative to a high-functioning learning health system, bringing together parents and families, clinicians, researchers, and QI specialists to apply research findings and other knowledge that is generated while delivering care for children with HLHS. That collaboration will be a model for a rare disease network -- local parent/clinical teams joined in a national community that uses data for research and QI to improve care and outcomes for a high risk, relatively small patient population.

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INTERSTAGE CHANGE PACKAGE | Many of the improvements made thus far in the collaborative are highlighted in the Interstage Change Package which is available on the website.

https://goo.gl/E7zhEA

LEADERSHIP | Current NPC-QIC Leadership Members

o Jeffrey Anderson MD, MPH, MBA, Cardiology Chairo David Brown, MD, Cardiology Vice Chairo Carole Lannon, MD, MPH, Network Science Leado Stacey Lihn, BA, Parent Lead

PARTICIPATION IN NPC-QIC |

Participation in the NPC-QIC Learning Collaborative1. Effective participation in NPC-QIC requires a multidisciplinary team including

representatives with sufficient authority to effect change in the areas of focus in the Key Driver Diagrams (see pages x-x):

A site’s Team may consist of: Cardiologist NP/RN from clinics responsible for interstage care, parent education and

parent management of child with hypoplastic left heart syndrome. Data coordinator – person who can facilitate data entry into web database,

who is familiar with medical record documentation and points of care A parent of a child with hypoplastic left heart syndrome Representatives from: Neurodevelopmental, ICU, Fetal, Surgery, Social Work,

Nutrition, IT

2. Formal commitment by a Senior Leader of your site or organization to support you in this endeavor and to provide necessary resources and time to devote to testing and implementing changes in the site. At your request, we will be happy to speak with your leadership to explain the collaborative and its expectations, and how it could fit in with organizational quality improvement goals. The Senior Leader should be someone outside the improvement team that has administrative responsibilities/ oversight for the clinic area.

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3. One member of the core team should be designated as the site’s Key Contact. A Key Contact is defined as the individual who is responsible for organizing day-to-day activities, including coordinating regular team meetings, managing improvement responsibilities, and ensuring that reports and/or data are collected and reported by their due date. Because the Key Contact is the site’s primary communicator with the NPC-QIC project team, it is essential that they are easily accessible and can disseminate information quickly to fellow team members.

4. The qualifying elements below are required before your program can claim participation in the National Pediatric Cardiology Quality Improvement Collaborative and for US News & World Report surveys, and to receive Maintenance of Certification credit with the American Board of Pediatrics.

Completed application Remittance of full yearly participation fee Enrollment into registry and completed data entry of >90% of eligible patients Completion of enrollment audit requests Satisfactory and timely resolution to data discrepancy reports Completion of quarterly narrative reports Team participation: team representation at >75% of Action Period calls per

year, and Team representation at all Learning Sessions, and Lead Physician participation in at least 1 Learning Session per year

Adherence to NPC-QIC privacy expectations in Limited Data Use Agreement and protocol

Proper attribution to NPC-QIC with data use5. Participation in a web-based data collection tools (REDCap, Brookes) to populate the

Collaborative’s registry and ensure that the changes you are making are resulting in improvements.

6. Willingness and commitment to test and implement changes for improvement via participation in Learning Labs.

The NPC-QIC Collaborative will: Provide evidence-based information on care of patients with hypoplastic left heart

syndrome disease Offer coaching to improvement teams on applying the Model for Improvement to

implement key changes at the Learning Sessions and on action period webinars Provide each team daily charts/reports on site and aggregate data Provide tools, forms, and other aids to help with implementation of key areas of care Provide data entry support and facilitate utilization of the REDCap registry and

Brookes online system

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PARTICIPATION FEE |

The participant fee of $15,000 per academic calendar year (July-June) per site is subject to change.

This fee provides partial support to the Collaborative so that teams can:

• Learn from colleagues about best practices, effective tools, and strategies• Improve care and outcomes for infants with congenital heart disease • Learn and apply formal Quality Improvement methods• Utilize the collaborative to address patient safety and quality improvement metrics• Earn Maintenance of Certification for participating physicians and colleagues• Earn Continuing Education credit for Learning Sessions• Use registry data for research

In addition to demonstrating your cardiology program’s commitment to improving care, participation in the Collaborative promotes the involvement of parents, fosters closer relationships and is known to achieve better outcomes. Financial support of the Collaborative from teams also provides a tangible commitment that sends an important message to our present and future funding sources. Added benefits include the ability to satisfy the QI portion of the APB’s maintenance of certification requirement and obtaining US News and World Report credit for participation in the Collaborative.

A prorated fee structure has been developed for teams that join the Collaborative mid-year.

We will provide a letter and invoice to your key contact and lead physician after we have received your application.

KEY DRIVER DIAGRAMS |The Key Driver Diagrams on the following pages illustrate the areas in which we work to achieve our improvement goals.

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KEY DRIVER DIAGRAM | FETAL

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KEY DRIVER DIAGRAM | PRE-OP ICU (SURGICAL/ICU)

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KEY DRIVER DIAGRAM | STAGE I PALLIATION (SURGICAL/ICU)npcqic.org 8

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KEY DRIVER DIAGRAM | POST-OP ICU – STEPDOWN – FLOOR CARE (SURGICAL/ICU)

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KEY DRIVER DIAGRAM | DEVELOPMENT

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KEY DRIVER DIAGRAM | PATIENT AND FAMILY SUPPORT

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KEY DRIVER DIAGRAM | TRANSPARENCY

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INTENT TO APPLY |

Please complete this brief Intent to Apply Form and email to info@npcqic.org

We intend to apply to participate in the National Pediatric Cardiology Quality Improvement Collaborative.

By submitting this intent to apply, we intend to submit the full application within two weeks.

Organization Name: ____________________________________ Date:________________

Key Contact Name:____________________________________________________________

Title:____________________________________________________________________________

Address:________________________________________________________________________

City:______________________________State:________________ Zip/Postal Code:_____

Phone:______________________________ Fax:______________________________________

Email: __________________________________________________________________________

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SITE APPLICATION |

Please complete this brief questionnaire and return to info@npcqic.org

Date: ___________________ Site Name: ________________________________________

Name of person completing this questionnaire: _____________________________

Title: ____________________________________________________________________________

Email:________________________________ Phone number: _______________________

1. Briefly describe the aspects of your hospital/clinic/organization that relate to care of the infant with univentricular heart disease (including type of organization, size, structure, location).

2. In addition, please complete the Core Improvement Team Information grid on page 12.

3. What does your organization want to accomplish as a participant in this Collaborative?

4. Please estimate the # infants with newly diagnosed hypoplastic left heart syndrome/year :

5. Please estimate the # infants with congenital heart disease your site sees each year :

6. Estimate what percentage of your surgery patients are followed elsewhere.

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7. Does your pediatric cardiology team utilize a nutritionist as part of your outpatient clinical team on a regular basis? Please describe resources available to you for nutritionist/dietician support.

8. What is the name & position of the Senior Leader who can remove whatever obstacles may arise or to obtain necessary resources during the Collaborative? In addition, please have your Senior Leader complete the Senior Leader/Administrator Agreement.

9. Briefly describe any experience that you or others have in initiating successful improvement activities, participating in a learning collaborative, or any experience with measurement of quality outcomes. In what topic area(s)? Do you have quality improvement support within the unit structure or from the hospital? Examples of this support would be data collection, team facilitation, meeting documentation, and planning for improvement activities aimed at helping you accomplish your goals.

10. Have the members of your proposed core team worked together on a prior project?

11. Is the proposed clinic setting currently involved in a major change process or research study that demands a great deal of time? Is your site experiencing significant organizational change (e.g., merger, change in leadership, vacancy in leadership, or EHR implementation)? Please explain.

12. Please add any additional information about your setting that may be relevant to your participation in the NPC-QIC collaborative.

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TEAM INFORMATION |

Hospital Name:

Contacts Title Name Email PhoneKey Contact:

Key Contact:

Data Entry:

Finance:

Fetal:

Intensivist:

Cardiologist:

Surgeon:

Neurodevelopment:

Dietician:

Social Work:

Cardiac ICU Director:

Cardiac Care Coordinator:

Other [please list]:

Other [please list]:

Other [please list]:

Other [please list]:

Other [please list]:

Other [please list]:

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SENIOR LEADER/ADMINISTRATOR AGREEMENT |

Name: ____________________________________________________________________________

Title: _____________________________________________________________________________________________

Organization:___________________________________________________________________________________

Direct Phone: __________________________ Direct Fax: _____________________________

Email: ____________________________________________________________________________

As the Senior Leader*, I fully understand the Collaborative’s objectives and expectations. Furthermore, I agree to support the team and will work with them to remove any barriers and/or provide the resources necessary for them to achieve their improvement goals.

Senior Leader Signature: __________________________________________

* The Senior leader should be someone outside the improvement team that has administrative responsibilities/oversight for the cardiology clinic.

Please email this Senior Leader signature page to info@npcqic.org

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AFTER APPLICATION IS APPROVED|

AFTER APPLICATION IS APPROVED SITE WILL BE SENT:

Regulatory Documents (Protocol, Consent, Neurodevelopment materials) Legal Document (Data Use Agreement) Invoice for participant fee Monthly Action Period call and Learning Session meeting invites

AFTER INVOICE IS PAID:

New team orientation call will be scheduled

AFTER RECEIPT OF IRB LETTER OF APPROVAL, SIGNED DATA USE AGREEMENT, AND PAYMENT OF INVOICE:

SharePoint access will be given Team will be provided with security access forms for access to REDCap data base A site profile will be created for ASQ in Brookes website Database & ASQ orientation call will be scheduled

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